Sunday, May 18, 2014

For the love of God...

Alternate title: How not to hurt someone whose child is suffering.

We have a friend whose child is being tortured with never-ending bouts of pain, surgery, medical intervention... pain is trying to beat the life out of him. I can only imagine the level of exhaustion they're feeling, having been to the brink of my own sanity at a much lower level a time or two.

Everyone feels helpless.

If you have a strong faith, I'm sure it's hard to fight the urge to share it with someone who has been laid low in life... but trying to justify their pain to them by telling the parent, or worse, the CHILD how it's all part of God's plan, or how they just need to believe HARDER only causes more pain.

There is nothing useful in a locker-room pep talk to someone who is depleted in every way. 

If you think it's constructive to teach a lesson via sermon to someone who you feel could benefit from hearing how YOU find comfort in thinking God is using our baby to make you grateful for your own child's robust good health, please don't share your epiphany while they're cutting mine open again.

If you're sure suffering is the One True Path to enlightenment for the next life, there's a time and place for sharing your theory... not here and not now.

I get it, I really do.

Most people who treasure their faith are offering their prayers up as the only gift they have in hopes of healing the suffering they see.

Like his guy.
Tell me you're praying for us, and I'll see your heart and know it's a gift of love from your heart directly to my child.

Let me know you're there, wanting good things for us. I'll feel less alone.

Let me pour out my heart to you, or even just sob uncontrollably for a while while you hold my hand and just sit there.

You're good enough. Your love is good enough all by itself.

Understand that there's just no way you CAN understand our pain, even if you've had your own pain. We all hurt differently.

Tell me you feel helpless and don't KNOW the answers. I'll know you get it. We ALL grapple for just the right thing to say as if it will magically take our friends' pain away because we love them.

Understand that not seeing God the way you do just may be my path. I promise not to come into your moments of pain to try to convince you there is NO God because of your child's pain, that your belief suffering is the path to heaven is wrong, and you should doubt more and just deal with it because shitty things happen to people who don't deserve them every day.

I won't. You know why?

Because it's not about me.

I believe in miracles, no matter what they're called. I've seen my child's eyes open when nobody thought they would.

I believe that even the people who feel the need to preach, even the one who told me my child suffers because of my sins, because I don't have blind faith, or because I need to visualize with sincerity and "manifest" wellness probably mean well.

Deep inside.

Very deep.

Thursday, May 15, 2014

Shake, Rattle and Roll.

 Seizures suck. I've been slow in writing about his last trip to the hospital because we've been sorting it all out.

Steven has had seizures that we've caught since he was 5 or 6 years old. They can't pin down where they come from, why he has them, or how to make them stop. Luckily, his seizures were mild, he never lost consciousness and we were just irritated by them.


It's starting to look like (and this is my Dr. Mom Half-baked Theory) the last med we added after 5 futile days in a Minneapolis center has created its own monster.

Three times, we've tried to step down his dose and three times set off a tonic-clonic nightmare in his brain that left us all in disbelief. Instead of our comic routine of growling and laughing to try to scare his leg spasms away when a "regular" one hit after PT, his head snapped to the side, he went silent, then the violent jerking and twitching hit.

Time stopped.

I guess if you're going to have a crisis, an office attached to a walk-in clinic with a fire station across the street is as good a place as any. We were immediately surrounded by what seemed to be the entire cavalry.

I remembered to breathe while trying to look calm and pull answers to questions lobbed from all directions out of various crevices. As long as HE was breathing,  I could too. Last time, he stopped...

The fireman and the paramedic who drove the ambulance kept making sure I knew they had lots of radio traffic going, so not to be freaked out if I hear things that sounded bad.

My eyebrow went up.

Oh, you mean like last time, when I wasn't supposed to hear the guys hovering over my kid radio in that "the patient has become critical"?

Okay, I'll play along while I adjust myself to make sure the Mom eyes in the back of my head had a little help from a sudden case of lazy eye... when Moms can see to the left without turning their heads. This is usually only used to watch kids without alerting them to the surveillance. It just also comes in handy to produce the illusion of cheerfulness and blind trust in the medics while still allowing one to see every move in the other direction.

Poor Steven, the pretty young lady working on him keeps asking to hold his hand.  If THAT didn't get him, what would?

He came out of it just when his new friend was about to add some ativan to his versed. He started to wake up after the shaking wound down, and I was thrilled to see him bat his lashes at her a little.

He was improving steadily while we held down the fort in the ER. My brain bounced between the young nurse who remembered him from high school and the grumpy man on the other side of the curtain who was steadily losing a battle with the women in his life about whether he was going to just march out of there, get his Duane's House of Pizza and go HOME or humor them and spend the night to see if his blackout was another heart attack like the one he conveniently forgot to mention to the first doctor.

His wife and I bonded, because my guy heard about the Duane's idea and suddenly thought it was GREAT planning.

Thanks, old guy.

I DID almost have my own heart attack while they rolled Steven off for testing.

We refer to it as:

The Bathroom Incident. (Cue dramatic music)

The restroom for guests was just across the ER, past the busy nurses' station. I'd had a LOT of coffee, so I was a frequent flyer of sorts.

On my third trip, just as I was completing the process and washing my hands like a good girl, there was a knock at the door.

"Are you okay?"

Um, yes?

I opened the door to see the young nurse and thought "WOW, this is service!" All eyes were on me, and I hadn't even played the trumpet or anything.

Oh, but you know what?

The help button has a loooooonnnnggg cord attached. Somewhere between liftoff and purse-grab, I pulled it.


I gave a red-faced parade wave and scurried back to my spot in time to hear the other dude give in to the third daughter joining the dogpile. He got his pizza IF he stayed.

Steven decided he could do ONE night, especially since friends and helpers he knew and loved helped us get settled and retrieve his chair and the van. I got to run home for a bit, feed the pouting cats, pack a bag and grab a Happy Meal. Little did I know when I got the My Little Pony meal, they were referring to the contents of the bun and not just the toy prize.

After double-checking with the nurse... a nice young man with an accent that surely inspired at least one Coen Brothers stereotype... we settled in to "sleep".

The old man in the next room had to have had pneumonia, because the only thing that could have produced those sounds otherwise would be an old Model T backfiring in a muddy barnyard. Just when I got my round edges packed and balanced in the square corners of the unforgiving vinyl and concrete recliner, here it came... HOOOORRRRRKKKKsputterBARKBARKwhoooooopGROOOONNNK, with a phlegmmy spit for emphasis.

By about 5:00 a.m., it left me contemplating odd things...

The size of this baby... what is IN the wipes anyway???
Were we actually stuck in the bottom one here?

What's the worst that would happen if I tried this at home?

Last but not least... just how absolutely wonderful it was to sit awake and listen to him breathe.

Sunday, May 4, 2014

And it isn't even Mother's Day yet!

An impromptu poem by my son:

Nobody loves me as much as you do,
as much as you do when you help me go poo.